Dubbie – Update

 I just received this email from Joyce, Dubbie’s daughter.  Please continue to pray for him and the family.

Last night Dubbie was quiet.  He didn’t open his eyes much, but squeezed my hand a couple of times.  He has periods of restlessness, observed mostly by nurses and Nannie.  When I’m there, he is usually quiet—same for Dad.  But, anyway, the status at this time is that his vitals are all good, except for a slight fever, he is receiving the remainder of the antibiotic by mouth, crushed in diabetic jelly, and is only on oxygen.  The IV has been removed because he is swallowing liquids, although infrequently.  They are watching closely for catheter irritations, for bed sores or pressure irritations, and other signs of needing to be changed or moved frequently.  His hands are still strong and he follows instructions sometimes when nurses ask him to open his mouth, or try to turn over by grabbing the railing.  He can at least help accomplish those things. 

Nursing Homes, Part 4

This is fourth and final (for the present) post on nursing homes. It has been an interesting process for me as I thought and remembered both the good and bad points about our Mother’s stay in a facility. Hopefully, my series of posts on this subject will be useful to you. Actually it is my hope that you are never faced with the decision of placing a family member in a nursing home.

7. Always make sure, on behalf of your family member, that his/her doctor’s orders are being carried out by the staff of the nursing home. Do not assume anything. Most of the time most staff members are very conscientious, and they will follow completely ‘doctor’s orders’. For them we are very grateful.

Then there are the others. There are not many of them, but they are present and always will be. I do not believe they are purposely neglectful, just inattentive. It is also possible that they are overwhelmed with their responsibilities and in their efforts to be sure that their residents are taken care of, tend to rush through tasks, not making sure to take care of the details. Example: When Mother’s feeding tube was put in, the doctor gave specific instructions for her bed to always be at a 45 degree angle. The reason being, if I remember correctly, so that should a problem occur with the feeding tube, she will be less likely t0 aspirate. When those orders were given, we put a sign at the head of Mothers’ bed stating that her bed be always left at a 45 degree angle, and we talked to the administration, making sure they had notified the staff about this very important instruction from the doctor. In spite of the measures taken on our part, we still, on numerous occasions came in and found her lying in a flat bed.

When the doctor changes the medication of your family member, always verify that the medication nurse has made the necessary changes on their chart. Again, don’t assume anything. You must make sure for yourself.

8. If you have concerns about your family member’s care, say something. Talking to a CNA(aide) will probably not fix the problem, because there are several CNAs taking care of your loved one on different shifts throughout the day and night. Not everyone will receive hear about your concern and therefore will continue doing what they have been doing. The best thing is to talk to the head nurse on that shift, or if necessary go to the director of nursing or the administrator. With a smile and nonthreatening tone, voice your concerns. Probably they will listen, take notes, and decide on a course of action to make sure the problem is solved and your family member’s care meets your expectations. Even then, I am sorry to say, you must check to be sure your concerns were communicated to all staff involved in caring for your loved one.

9, When you are first gathering information about a facility and deciding on placement options, ask about the ratio of CNAs to residents and if that ratio changes during the day or during then night. One of the things that concerned me, and I didn’t realize the full scope of this (in my opinion) problem at first, was that there were times during the day when at this facility, most of the CNAs were off the floor and the residents were left with almost no one to call on for help.

At meal time the CNAs took all the residents to the cafeteria to eat and stay with them to help serve the food. There were a couple of CNAs on the floor, but they were given the task of feeding residents who couldn’t get out of bed. These aides did the best they could if they saw a resident in need, but unless it was an emergency, that resident had to wait until the feedings were complete.

In addition to meal times, this nursing home had a ‘smoking break’ for residents and staff. The smokers would all go outside to the patio and puff away. It seemed that most of the CNAs smoked and they all went at the same time on this break. There were times when Mother needed assistance for something, and she had to wait until her CNA was back on the floor. In my opinion, the smoking breaks could be scheduled at a staggered time so the aides could cover for each other.

These times of short staffing on the floor became a personal problem for us during the short time that Daddy was a resident. About 3 days before his death, Rick and I decided to take a quick trip to Dallas to see our daughter and son-in-law, and also because I had a doctor’s appointment there. On our way to Dallas we decided to stop in at the nursing home and see Mother and Daddy. This was about 4 days after Daddy’s nursing home stroke. He had been semi-comatose for several days, barely responding to questions or acknowledging someone’s presence. We found Daddy fully clothed sitting in his lift chair sleeping. We talked to his CNA and she told us that she asked him if he wanted to get up that morning and he said yes. Therefore she got him up and dressed. There was no problem with her getting him up. I was thrilled to see him sitting in that chair. However, I could tell that he was getting tired and needed to go back to bed. Rick and I talked to him for awhile and he did seem a little more alert than before. About 11:00 a.m. we needed to leave. I went to the nursing station and told the charge nurse that Daddy needed to go back to bed. Daddy was beginning to be in pain, getting cramps in his She sweetly assured me that he would be transferred to bed. Something inside me told me not to leave until that was done, but I left anyway, feeling the need to ‘get to Dallas’. Because I continued to have this nagging concern, I called back about 1:30 p.m. to make sure that he was back in bed, and ‘sure nuff’ he was still in that chair. I told the nurse, the same one, that he had needed to be put to bed, reminding her that I had told her so over two hours ago. Once again, she assured me that Daddy would go right back to bed. Not completely trusting her words, I called again about 2:30 p.m. A different charge nurse answered this time and I asked again. He was still in that chair. She went immediately and put him back in bed.

Oh yes, I was mad. Yes, the administrator heard about it as well as the director of nursing. The reasons? Just after 11:00 a.m. every day, most of the staff is in the cafeteria feeding the residents. There was no one except the charge nurse available to transfer him back to bed. At 1:30 the facility was changing shifts.

In addition to being angry about my father being left in his chair for hours after he needed to be back in bed, I also felt a heavy burden for those little people who had no one to advocate for them. Were they left for hours also in chairs, beds or wheelchairs, in pain from being in one position for so long and no one available to help them? What if someone had a stroke or heart attack during meal time or a smoking break? My sisters and I voiced these concerns to our administrator, and though these concerns appeared to be well received, no changes were made while Mother was a resident in this facility.

I could make several more points on this topic of nursing homes, but for now I will write about other things. Please understand that reputable nursing homes are not inherently bad places and have bad staff members. Most of them are good facilities with staffing that is competent, caring, and compassionate.  However, as I suggested in a previous post, because the administrators and staff are human, mistakes will be made. It is up to you and me as family members to shoulder the responsibility of being aware when these errors happen and making sure they are fixed. No one else will do it on behalf of your loved one. We must ‘stand in the gap’ for them.

Nursing Homes, Part 3

This post continues my thoughts (and apparently I have quite a few of them) on nursing homes.  It is my desire to help you, my readers, gain understanding and insight that will be useful when or if you are faced with the necessary decision of nursing home placement for someone in your family.

4. Moving a family member into a nursing home is exhausting.  It was for me.  There was so much to do.  When we moved Mother into the nursing home,  there were many things she needed that she had not needed in the hospital.  We got her several changes of clothes, toiletries, a TV, decorations for her room, a bedspread, and the list seemed to go on and on.  We labeled everything; her underwear, her socks, her clothes, everything.  Even with all the labeling, her things seemed to disappear.  Part of the time, the aide that did laundry put her things in another room.  We had a little refrigerator for her with things she liked to eat.  At first it was a real treat for her, but she could not get into frig by herself so we gave her the goodies when we were there visiting.  We had candy for her stored in one of the drawers of her chest.  She loved chocolate and delighted in eating it.  The candy began to disappear from her drawer.  Because her memory and her communication skills were so poor she could not tell us who was the culprit.  We never knew if it was  staff or another resident.

Please understand that in some nursing homes things are taken from residents rooms.  I hate to use the word stolen, but sometimes, especially if staff members are doing it,  theft if the most accurate term.  Residents will sometimes wander from room to room and bother things, but most of the time they are harmless.  Most staff members are wonderful and would not dream of taking something from a resident, but there will always be one or two……

5. If you are the primary caretaker of your family member, make sure that you have Medical Power of Attorney.  That may not be the correct legal term, but whatever it is called, you need that legal document, and you need several copies of it.  Though the privacy laws are much tighter now than just 3 years ago, a Medical Power of Attorney should enable you to have access to your family member’s medical information at the nursing home.  Because I am not a legal expert and are not knowledgeable of  the current privacy laws, you need to not rely on my information as a legal source.  Please find a professional in this area and follow their advice.

6. By having Medical Power of Attorney, you can keep close supervision of the medications your loved one is taking.  Please check frequently for changes in dosages, as well as medications that may be added or taken away.  Ask questions. Ask questions. Again, ask questions if something doesn’t seem right.  I remember that Mother was having trouble with her bowels.  It seems she was having diarrhea and we couldn’t get it stopped. They were giving her mediations for this.   When I checked on her medications, I found that she was also taking meds for constipation!  I was astounded that her nurses had not caught this problem. If I had not asked questions, then we may not have found the problem. Most of the time we were notified when it was necessary to alter her meds, but sometimes we found that we were not made aware of all the changes.

In this nursing home, the ratio of medication nurses to residents was astounding.  Their responsibility was huge.  Most of them were competent.  Some were competent and compassionate.  I was sorry that they had so many residents for which to care.  However, in my mind and in the mind of my sisters, our mother was their only patient.  We were always nice and friendly to the nurses, but they knew we were very serious when it came to our mother’s care.

Yes, there will be a part 4 on the topic of nursing homes.

Nursing Homes, Part 2

If nursing home placement has been or is about to be necessary for one of your loved ones, there several things to  consider.  Once again please remember that I am making these statements and expressing my opinion based on our experiences with one nursing home.  I am not a health care expert, nor have I had professional training in the area of nursing homes. I am just a family member who has walked down the nursing home path with my mother.

1. Search, check, get recommendations, make visits, and keep looking until you find a nursing home that you are comfortable with.  Look for cleanliness, comfortable furniture, staff going up and down halls interacting with residents, and food that is reasonably good.  Personal note: I have seen food in three different nursing homes and an assisted living home.  I hated it in all four places. ugh. I know there are probably facilities where the food is excellent.  I just haven’t found it yet.  Look for smiles.  Smiles not just for you.  Those don’t count because they are wanting your business.  Look for smiles on the faces of the staff and residents as they interact with together.  Look for smiles as the staff interacts with each other. Look for smiles on the faces of the residents as they interact with you.

Some of you may have other things that should be added to this point.  Please feel free to add comments about things that need to be found in a facility before placing a family member there.

2. Once you decide on a nursing home and begin making preparations for the transfer, start building relationships with staff members and the administration.  Get to know them personally.  It is essential that you build a friendly working relationship—-emphasis on friendly.  These people do not need to see you a a threat, at least from the outset, and hopefully, if this is an above average facility, you may never be a threat.  They must see you as someone who is not looking for things that are wrong, but instead they must see you as someone who will find things that are right.  The staff and administration must see that you join them as part of the team caring for your loved family member and their new resident.

3. That said, the staff must understand that you will be consistently vigilant in your oversight of the care your family member receives.  Yes, I said, oversight. Readers please understand that nursing home placement does not relieve you from the responsibility of caring for your loved one.  In some ways your responsibility increases.  You may not be doing the dressing, bathing, and feeding, but you are watching the actions of many people who do.  Please do not leave your family member in a nursing home without someone to check on them daily or almost daily.

We were always so sad to see precious little old people in our nursing home who had not seen a family member in weeks or months  We knew this to be true because the staff would tell us.  So sad.  More about this later.

I have much more to write on this subject so I will sign off and tomorrow will be Part 3

Nursing Homes

Writing this post about nursing homes has been on my mind for quite a while. Truthfully, I can only write about our experience with one nursing home, however some of the things my sisters and I learned are applicable to all nursing homes. The things I am going to say here apply to conditions and relationships with staff in reputable nursing homes of satisfactory and above quality.

Yes, there are bad nursing homes. Those I will not discuss except to say do not under any circumstances allow one of your loved ones to stay there. There are better choices. Make them.

When it was time to select a nursing home for Mother, we asked many friends and acquaintances for recommendations and then based on those recommendations we made personal visits to each one. The one we selected had an excellent rehab program. At the time we were certain Mother had the ability to get stronger and thus would benefit greatly from their program. When I visited this facility, I was impressed with the feeling I got when I first approached the nurses desk. There were smiles on the faces of the nurses and aides, and they seemed to have a good attitude. I didn’t see any scowls, or hear any grumbling of any sort. One would think that possibly they were just trying to impress me, because somehow they sensed that I might be bringing them a new resident. Yes, that could be true, but at the time I did not sense any fakeness at all. This staff seemed to be genuine in their positive attitudes. Generally, during the year and 10 months that Mother was a resident there, I saw lots of staff come and go, and, for the most part, most days and most staff members seemed to be positive and have good working relationships.

Oh, yes. We had problems and some of them I will share with you. However, it is the good things that I wish to focus my thoughts on first. The rehab program was indeed excellent. Mother began her rehab and did make progress. The ladies who ran that program were wonderful to Mother and to all the residents I saw under their care. Mother received speech therapy, occupational therapy, and physical therapy. It was great to see her beginning to make progress.

After Daddy passed away, and as the months passed, her progression turned into regression. The therapists continued to work with her as long as they could justify keeping her in the program. Even when they had to dismiss her, they would look for opportunities to readmit her again. I don’t remember the circumstances that gave them the ability to starting giving her therapy again, but I know they did their best to keep her in their program.

The therapists loved Mother. They would weep as they talked to me about her. She was always cold so they would make sure she had blankets on as much as possible. They did everything in their power to make her comfortable. It broke their hearts and it did mine when we finally had to accept the fact that therapy was not appropriate for Mother any more.

In any nursing home you will find staff who loves their job and residents and you will find staff who doesn’t. That is just the way it is and always will be. In addition to that, you will find what you are looking for. If you choose to find good and positive people, you will find them. If you choose to focus on what if negative, then you will find negative people.

As I mentioned above, during the time Mother was a resident in this facility, there was a continual turnover in staff. In spite of the constant change, there was always someone who was responsible for caring for Mother, that loved her and did a good job of seeing to her needs. I think that was God’s provision for her. Those staff members we loved and appreciated, and we told them so.

There are many nursing homes who are run well and who have a genuine desire to care for and meet the needs of their residents. If a nursing home placement is now necessary for one of your family members, look and keep looking until you find one. Don’t settle for a poorly run facility for any reason. You will have fewer problems and more peace of mind if you keep your standards high. Most importantly, your loved one will have better care.

Tomorrow: Oh, the problems we found and challenges we faced.

Kenny, update

I emailed Kenny’s sister-in-law, checking on updates for Kenny. This is her reply. Please continue to keep Kenny and his family in your prayers. God’s hand is present here, guiding, comforting,giving strength and wisdom.

Kenny got to San Antonio on Monday and they could not start his treatment. When he went for the prescreening procedures the week before they forgot to do some of the bloodwork that was needed. They did the bloodwork that day, but since it takes 72 hours to get the results back they couldn’t start the treatment. He is going back on Sunday and will begin treatments on Monday. While they were there they got to meet a woman from Oklahoma who was in her 15th day of treatment who is also in this program. She had had breast cancer and then had a sarcoma come up on her hip then it metazised in her lungs. The tumors in her lungs were the size of potatoes. They got to talk about the treatments with her and were glad they could talk with someone else who is in the program. They know there was a reason they couldn’t start there treatment last week and are still very upbeat about the possibilities of this new treatment. They do appreciate all the prayers from everyone. Kenny is considering starting his on blog and when and IF he does I will email you the blog page. Thank you and everyone for keeping them covered in prayer.

No “do overs”

It was in January (I think) of 2005, that my husband, Rick, said, “You need to go see your mother”. You see, I hadn’t been going to see her very often, perhaps once every 2-3 weeks. I’m not sure why. Perhaps it was difficult to see her in that bed. She could still talk some. She would answer questions with a word. However, she did look at me most of the time when I talked to her and she seemed to understand what I was saying. It was just hard to go see her.

Staying away, because it was hard for me, was wrong. You see, by doing that I put the focus of Mother’s illness on me. It was hard for me. I didn’t want to see her that way, etc. The truth was that no matter how I felt, no matter how hard it was for me, I’m sure my mother wanted and needed to see me. She needed to hear my voice. She needed to see my face. She needed to feel my hand touching hers.

It would be so nice to have “do overs” here, but this is one of those times in life when there are no “do overs”. So my friends, if you have a family member who is……..OK, I’ll just say it…….dying, slowly or quickly, it doesn’t matter. Make sure that you keep the focus on them; their needs and feelings, not yours, because when it is over, it is over. The door is closed and there is no opening it again.

My sister, Susan, however, continued her faithfulness, visiting Mother every day, sitting and talking with her. Susan talked about everything with Mother. Her day at school. The dog’s illness. The war in Iraq. Everything. I am sure this was as much a comfort to Mother and it was wonderful memories for Susan.

In February and March Mother began to seriously decline. It wasn’t going to be long.

More Thoughts about Feeding Tubes.

  When a patient or family member has to decide whether or no a feeding tube is an appropriate life prolonging procedure, it is almost always a difficult decision.  And it should be a difficult decision.  It should require much thought, prayer, and even debate.  Whenever a family or patient arrives at this bridge and must cross it, many, many things must be considered.

I realize my writing thus far might lead you to believe that I am completely against feeding tubes.  Generally speaking I am not in favor of them.  However, there are cases where feeding tubes might be appropriate.

I have a close friend whose mother was diagnosed with esophageal cancer.  Mary, I shall call her, was in her 50’s at the time, and the cancer was in an early enough stage that chemo treatment was decided upon.  After several treatments, she lost her ability to eat.  The decision was made to insert a feeding tube.  This tube allowed her to live through the chemo treatments which put the cancer into remission.  She ate food and lived fairly well for another year or two before the cancer became active again and she passed away.  In her case the feeding tube was entirely appropriate.  The time it bought her was quality time.  She had the ability to go and do many things, share time with her granddaughter, tell stories, laugh and enjoy life.  I was glad that she had been given the feeding tube.

On the other side of this question, if the time bought is life with very little quality, then perhaps inserting a feeding tube is not the best decision.  Oh, yes, this is hard.  Allowing a loved one to just die is so very hard.  There are not many harder things in life.  Could I have allowed Mother to just die from pneumonia caused by food particles going into her lungs?  Yes, I think so, because by that point she was ready to go to heaven.

What about myself?  Would I want a feeding tube for myself?  Again, it would depend on the circumstances which has brought me to that bridge?  I will not cross that bridge for myself ahead of time, nor do I recommend that anyone make that decision ahead of time.

I share these thoughts with you as just a ‘regular person’.  I am not a health care professional and I have had no medical training.  My reasons for and against feeding tubes are just that: my reasons.  Each and every family that faces this situation must make their own decision for their own reasons.   The decision must be made based on the best information you have at the moment, then you proceed forward, having as few regrets as possible.

Destiny

DIV { MARGIN:0px;} It is not always devastating illness that tears our hearts apart and  brings us to our knees in prayer.  This prayer request is for a baby girl, Destiny,  and her family, sent to me by another long time friend.  Please take this prayer request to heart and fervently pray that God will keep intact this precious family.

After trying for about 7 years to conceive a child, my son and his wife were told that they would probably never be able to have thier own children.  They were given this news in October 2007.  In December 2007, CPS called them with the news that the mother of the little girl that have basicall raised since she was 18 months old (she is now 8 years old and they have full costory of her) had had another baby girl.  They were asked if they would consider taking her with the opportunity to adopt later.  Of course, they jumped at this and considered the baby a gift from God.  With their two little girls, their family was complete.  Then, in May, a young man in his early 20’s called them with the news that his father was also the baby’s father, and he would like to see his half sister.  My son and his wife agreed to let him see her.  At this first meeting, he told my son that he and his girl friend had no interest in having children at this time, but might consider having children later.  Just a few weeks later, the hammer fell as my son and his wife were given the news that this young man is going to pursue custody of they baby that have had since early January.  They have bonded with her, she with them, and the sisters love each other dearly.  There will be a trial August 2 to determine who will raise this precious baby girl.  Please pray that that the young man will abandon his pursuit and this thing will never have to go to trial, but, if he doesn’t, then please pray that God will give the judge wisdom, and that this family will not be destroyed by being torn apart.   

The Feeding Tube

In the fall of 2004, Mother was hospitalized 2 or 3 times. I don’t remember why. At that time Mother’s conversations consisted of one word answers to our questions. If she did start a sentence, she was unable to hold the thought long enough in her head to finish it.

It was during this time that we noticed that she began to clear her throat frequently. It was like she continually had drainage or something in her throat. We mentioned it to her doctor during one of her hospitalizations, and he ordered a swallowing test. The test showed that she was losing her ability to swallow. Little bits of food were going into her lungs.

Oh, my. My sisters and I had an agonizing decision to make. We had to decide whether or not to have a feeding tube inserted in her stomach. If the feeding tube were not put in her stomach, she would most certainly die quickly, most likely of pneumonia caused by food going into her lungs. If the feeding tube were inserted then she would live longer, but be unable to eat or drink anything.

What a decision. My vote was against the feeding tube. I did not want and I didn’t think Mother wanted to be one of the little ladies in bed, just lying there for months and months waiting to die.

Susan was in favor of the tube. She could not bear the thought of letting Mother starve or die of pneumonia.

Darla was the swing vote. She was at the nursing home one day and watched Mother smile at children who had come to visit one of the residents. Upon seeing that smile, Darla could not deny her the feeding tube.

So the tube was surgically inserted and she soon became one of the ladies in their beds, waiting to die.

Tomorrow….my feelings about feeding tubes.